Now for an update:
It’s been one hell of a week for me.
After going a full 10 days without a headache, my cluster migraines came back with a vengeance. I have had one each day Mon-Thurs and again yesterday. It got so bad Wednesday morning that I had to call out from work. Each time, the headaches would be on the right side of my head, start around 6pm, run all night (often waking me to taunt me with the pain) then disappear around 11am the following day. The one exception was the Saturday migraine. It came on early in the morning and ran clear until about 5pm.
This morning was pure hell. I got up and walked into the dining room to talk to my husband. All of a sudden I was hit with blinding pain in my upper abdomen. Damn near took my breath away. I braced myself and sat down. The pain was constant with waves of spasming thrown in there for good measure. I thought for sure it was some sort of weird muscle spasm thing cause something was going haywire in there. This continued for about 3 hours, getting so bad I almost called an ambulance. Things calmed down a bit so I laid down in bed to rest, only to be hit with another wave of pain. So I finally called it quits and headed into a local urgent care place.
Based on my symptoms, a urine test, a chest x-ray, and history of taking daily gobs of Advil for joint pain, the doctor diagnosed me with gastritis. She gave me what she called a gastric cocktail of meds – Pepcid, Maalox, oral lidocaine, and one other that I forget. While the cocktail didn’t completely stop the pain, it helped tremendously. So it looks like I may have a new diagnosis and set of symptoms to add to my growing list. I also have Pepcid to add to my daily meds.
I’m back home now. Trying to get comfortable. My stomach is still in knots, pissed as hell for what I’ve put it through. But at least I’m not crying anymore or wishing I would just pass out already from the pain. That’s gotta count for something.
Can you identify triggers for your headaches? Where is the pain typically located? I found that locating and tracing the path of the pain was a huge part of helping my diagnosis. What else does it affect? Eyes? Ears? Balance, vision, appetite, digestion? All of those things are clues. I’m so sorry. Headaches of his severity are complete hell.
In my case, my headaches were at the base of my skull and lying down made them worse–eventually it felt like I had a hot iron shoved in the base of my skull and shooting out my eyes. My headaches were my worst complaint, but I had (still have) multiple other neurological symptoms. Turns out, my brain stem was compressed by a herniation of the cerebellar tonsils, and adhesions had grown connecting the herniation to the brain stem, cervical spinal cord, and arteries. This glued the base of my skull shut and resulted in a 100% blockage of CSF flow. My headaches were due to the mounting CSF pressure, and neurological symptoms due to a pissed off brain stem that is VERY no-touchy.
My condition is called Chiari Malformation type 1, but during the long process lupus, lyme, fibromyalgia, Meniere’s disease, rheumatoid arthritis, and in particular MS were suspected and/or diagnosed. (Every test for MS was negative, including the rather definitive spinal tap, but my local docs were still suspicious that maybe I was iust in the really early stages. Thankfully, nope.) FWIW it was discovered I do have Hashimoto’s thyroiditis; apparently it’s pretty common in Chiari cases. There isn’t a lot of research on it because there isn’t a lot of Chiari research period, but my surgeon (who is also a researcher) said there is suspicion is has something to do with the disruption of CSF flow and its effects on the pituitary gland. Oh–because it’s also being discussed here–I’m also vitamin D deficient, common in thyroid disease.
I’m so sorry, again, and I hope answers and relief are found soon. And really, answers are a relief in and of themselves, aren’t they?
I was driving and my tongue “felt thick.” People were convinced I was having a stroke (I knew I wasn’t) I went to the ER. To make a really really long story short, I’ve had, (in less than a year):
3 brain surgeries (biopsies at Mayo)
28 MRIs
3 PET scans
2CT scans
1 bone marrow biopsy
2 spinal taps
Sleep & swallow studies
Extensive rehab
175+ blood tests
7 months of chemo
Rituxan soon
I have/had other symptoms, like gait, speech, vision and balance (severe) but in the end----for me----it’s autoimmune. The technical diagnosis is (from Mayo) is “undiagnosed (we don’t know) inflammation” (we don’t know, but we know whatever you have it’s autoimmune based) My immune system is attacking my brain.
The “primitive” part of your brain that controls your eyes (and many other functions) is the “PONS” area near the brain stem. I’m not a doctor----I didn’t even play one on TV, but my guess is that’s brain related and possibly autoimmune.
I woke up this morning pretty achy. My stomach was still pretty sore, along with my back. But it’s nowhere near the level I had yesterday, so that’s a huge plus. No headache either! Woo hoo!
I seem to have two triggers. One is low blood sugar from not eating. That will trigger one pretty quickly. Even in the middle of my stomach pain yesterday I made sure to eat. I was terrified of getting a headache on top of the stomach pain. That would have been a special level of hell I really didn’t want to go to. Eating curbed the pain some which shocked me then but makes perfect sense now.
The second possible trigger seems to be dehydration. If I don’t drink much one day I tend to get headaches the next day. I’m working hard on this one. I seem to do pretty well at home. It’s when I get to work that I sometimes have trouble. I’m a teacher, so bathroom breaks aren’t exactly plentiful. And I tend to get so wrapped up in what I’m doing at the moment that I often forget to drink. I frequently miss eating lunch too if I work right through my break and forget. When that happens I’ll get really shaky and lightheaded at the end of the day, wonder why, then it hits me – I hadn’t eaten my lunch yet.
But then there’s the headaches with seemingly no cause. Those have me pretty stumped. I need to start a journal that I can take with me to the neurologist.
Ugh. This sounds just awful. I’m glad you finally got a diagnosis. How are you feeling now – any better?
Thank you. I was honestly kind of excited at yesterday’s diagnosis of gastritis. Even though it means I have another set of symptoms to deal with, at least these have a known cause and related treatment. I’ve been waiting for something like this to happen with all the Advil I take. Now that it’s happened and I know what to do about it, it’s something of a relief.
This sounds horrible! I’m so sorry. The more research I do, the more cases I find that sound similar to yours. Auto immune disorders can be so tricky to diagnose. Some never get diagnosed properly.
Thank you raindog. I have a really good GP who is determined to get to the bottom of this, so I know I’m in good hands even if it does take a while to get in with the rheumatologist.
It was right up there with labor pains. Scarier even because I didn’t know what was causing them. The cocktail was great though. I got relief pretty quickly. I didn’t even know liquid lidocaine existed in that form. It’s great stuff!
I went back to my GP to follow up on the gastritis diagnosis and to see if anything more could be done while I wait to see the rheumatologist. He gave me two more places to call and upped my Zoloft. The frustration of being in so much pain and not knowing why is doing quite a number on my morale. Other than that, he didn’t have much to offer me.
I did some digging around just now and I think I’m on to something. I’l pursue it further of course with the rheumatologist. I have nearly all of the symptoms of the hypermobile form of Ehlers-Danlos Syndrome. I didn’t mention many of the symptoms to my doctor - or on this thread - because I didn’t think they were relevant at the time.
Hypermobile EDS
People with EDS hypermobile type (EDS-HT, previously EDS III) will have very loose joints and soft, velvety skin without unusual stretchiness or wounding / tearing. EDS-HT is the most common type of EDS. Common medical problems include:
[ul]
[li]Joint dislocates or separates (called subluxation) with mild trauma[/li]
[li]Pain, which first appears as “growing pains” in young children, but can become more widespread and chronic in teens and older individuals. Pain is caused by the overall joint instability. Physical therapy and nonsteroidal anti-inflammatory medications are the main treatment for this pain. Surgery may give only temporary relief since the joints often become unstable again. [/li]
[li]Skin wounds may take more time to heal, and sometimes sutures from surgery will not hold a wound closed. Scars may stretch and widen. Stretch marks often occur.[/li]
[li]Bruising easily and nosebleeds and heavy periods may be common.[/li]
[li]May have dental issues, like high palate with dental crowding, poor enamel, multiple cavities, receding gums, bleeding gums, periodontal disease [/li]
[li]Jaw pain and dislocation are common and can lead to temporomandibular joint disorders (TMJ).[/li]
[li]Feeling dizzy, faint or “blacking out” when you stand up is common. This happens because the blood vessels do not react quickly enough to the shift in blood pressure when going from sitting to standing.[/li]
[li]Frequent headaches[/li]
[li]GI issues, such as acid reflux, irritable bowel syndrome (IBS) and gastroparesis[/li][/ul]
There is no genetic test for EDS-HT. The diagnosis is based on physical exam and medical and family histories. It is important that you find a doctor who has experience treating EDS-HT.
[/QUOTE]
I have hypermobile joints. As a kid I could do a split with ease. As an adult I’m considerably less flexible, but my joints themselves are still very "bendy. I easily score a 6 or better on the Beighton Scale.
The hypermobility can be caused by the connective tissue problems associated with EDS-HT. Many people with this disorder also have flat feet. My feet are like pancakes. I have had to wear orthotics in my shoes for years.
I dislocated my knee as a teenager just by planting my feet and turning oddly.
Growing pains were awful for me as a kid. I felt like my body was being torn apart.
I don’t have the vascular or skin symptoms such as easy bruising.
I have all dental issues listed except for periodontal disease.
I have awful TMJ. My jaw frequently locks and won’t open all of the way. It always pops when I open it.
I have had dizziness and blacking out when changing position from laying to sitting or sitting to standing since I was a kid.
Frequent headaches - the migraines I mentioned in my OP.
I have had GI issues since I guess I was a teen with IBS symptoms, acid reflux, and my most recent bought of gastritis.
Another site describes my pain perfectly.
Adding support to my theory is the sad fact that this disease is genetic. My older daughter shares my hypermobility and severe growing pains. She can lay on her belly, curl her legs up behind her head and literally lick her own feet. It’s crazy to watch. Both of my daughters have flat feet. They both also received orthotics and Early Intervention physical therapy at a young age to help with this. They both walked late (at 17 months for my 7 year old and 22 months for my 2 year old) possibly because they were so wobbly and unsteady. Their joints literally seemed unable to support them properly.
I could be wildly off here in my search for a diagnosis. But so much of my past and current medical history makes sense now. I’m not sure how my droopy eye fits in to this. It isn’t extreme and may well be within the realm of normal asymmetry.
I did a board search for Ehlers-Danlos and came up empty-handed. I’m hoping that anyone following my tale here is familiar with it enough to offer some guidance.
TMJ can definitely cause headaches not, on their own, what typically gets labelled as "cluster headaches.
More so it seems that among the most significant of your issues is the debilitating fatigue worsened by any meaningful activity (unless I misunderstand, which is of course completely possible) - EDS-HT does not cause that on its own.
Of course TMJ can be a trigger for other headaches and hypermobility can trigger muscle reactivity (hence their association with “growing pains” in kids), which in turn can contribute to tiring one out.
What’s the mainstay of treatment for EDS-HT? An individualized PT plan.
Holy crap, really? Guess what I have a probable diagnosis of, and of which we’ve just started the process of finding informed specialists and geneticists? Seriously, wild.
My neurosurgeon had me fill out pages on connective tissue symptoms and history when doing my pre-appointment intake (the whole thing was like 20 pages :eek: ). Chiari is very commonly (but not exclusively) linked with connective tissue disorders, with EDS the main one but others (like Marfan syndrome) also sometimes seen. He is not the correct type of doctor to make that diagnosis; what he wrote in my records was “probable hereditary disorder of the connective tissue.” This is important because people with EDS often have craniocervical instability (CCI), where the skull is wobbly on the top vertebrae (odontoid bone) rather than rigid. In those cases of patients with Chiari and CCI, decompression surgery (opening up the space around the crowded brain stem/blocked CSF flow; there are a few different procedures) is not enough–a craniocervical fusion is needed as well. Right now, my measurements show my skull hasn’t shifted to CCI-level angles, but I do have a pannus formation above the odontoid. This is sort of like a callous and forms in patients with connective tissue disorders as things that shouldn’t, wobble. (It’s also seen in rheumatoid arthritis–an autoimmune connective tissue disorder–but that was ruled out with me.) I’m in the monitor-and-see phase.
ANYway, now we’re trying to find an EDS-educated geneticist/specialist for a more precise diagnosis. Of the 6 main types of EDS, though, hypermobile is the only one that genetic tests cannot identify. :smack: Still, I want the testing to at least rule out the others. As my husband has Marfan syndrome (our poor kids!) we really need to know who has what so we can determine it in our children.
I’m on the search now for an EDS specialist–the EDS community is helping guide me. PM me if you want and I can share what I learn and maybe connect you to some groups.
How did I miss this?? Sorry, Ruffian, I’m somehow only now seeing your post. I will certainly PM you. I would love an ally in my search for a diagnosis.
So far, my docs seem to be taking a rather scatter-shot approach to diagnosis and treatment. I went to a neurologist, but only to treat my migraines. So I missed out on the multi-page symptom checklist you mentioned. Sounds thorough at least! I’m so glad you’re on the road to a proper diagnosis and treatment. UPDATE
MRSA
I went to an Infectious Disease Specialist for my recurrent MRSA infections. She prescribed me Bactriban ointment to put in my nose twice a day and Hibiclense wash to use every other day for a total of ten days. She says that for about 75% of patients, recurrent MRSA infections naturally last about a year on their own without any intervention. I’m at just over that now. So that fact combined with the extra treatment should hopefully be enough to knock this out for good. I’m hopeful. For now, we just wait. If it should reoccur we treat again. She isn’t too concerned with it. In the grand scheme of what she sees on a daily basis, I’m not all that severe of a case.
MIGRAINES
I went to a neurologist a couple weeks back for my migraines. He pulled up my MRI scan and confirmed that it was clean. As in nothing at all abnormal. No chiari malformation, no suspicious spots nothin’. Great news! He wasn’t familiar with Ehlers-Danlos, but obviously knows a lot about migraines. We talked at length about my history of migraines along with my family’s history with them. He prescribed me Topamax. I had to wait a bit to start the meds until I could wean my daughter. That was rough. She turned 2 in May but loves her nursies. It’s been a little over a week since we stopped nursing. I don’t know who it’s been tougher for, her or me. But it’s time. I’m not able to function with migraines. I’m not a good mom to her or to my 7-year-old when I’m laid up in bed with the lights out, nauseous as hell, grumpy, wanting to just die cause the pain is that bad.
Other than some really weird out of body experience type stuff the first few days and some crazy tingling in my hands and feet, I’m doing really really well on the meds. As in I haven’t had a single migraine since I started the meds 8 days ago. 8 days pain free!! It’s the weirdest sensation when I can feel my head starting to hurt. I feel the warning signs start. My ear starts to feel full, my temple will start to hurt just a little, and I’ll brace myself for what is sure to be blinding pain, nausea, the works, but it never comes. It just goes away. Wild.
Oh I do have one other wacky side effect. I can no longer drink carbonated drinks. They all taste flat. Coming from a girl obsessed with Pepsi this is a bit of a blow for me. Some people look forward to a nice cup of coffee or a glass of wine…I had my Pepsi. But hey, it’s certainly for the better in the long run health-wise. That stuff is awful for my body and I know it. Ah well. If that’s the worst of the side effects, I can deal.
RHEUMATOLOGIST
Next up is what should hopefully be the big appointment with the rheumatologist at the end of September. I’m hoping to get some sort of a diagnosis or at least a step in the right direction.
Sorry if this was rambling and a bit incoherent. The Topamax has my brain a bit fuzzy still as I adjust to it.
Do yourself a favor and stop googling. It causes way to much stress and no definitive answers accept scaring yourself. Having a brain MRI and/or CT Scan will assist your doctor(s) with diagnosis or ruling out possibilities. I’m sorry I’m not much help in you finding answers, but anything I could mention as possibilities are not qualified even though I have worked in the medical field, I am not a doctor. It unfortunately takes time for a concise diagnosis.
I’m sorry, I’m new here. I just saw your update. When you go to your rheumatologist, take a list of all of your symptoms with you. I have fibromyalgia, and suffer from various symptoms that affect my heart, lungs, stomach, legs, arms and head. Fibro is being found to have a much broader scope of effects on the body. Mainly muscle and nerve. I suffer from asthma, hypertension, GERD, celiacs disease, acute gastritis, numbness and burning pain in my extremities, migraines, chest pain, vertigo, Menieres Disease, vision disturbances, anxiety and depression. All have now been associated with severe fibromyalgia. Pay attention to your body and write down everything your feeling/experiencing.
The MRSA seems to have cleared itself up, thank goodness with no new infections since this summer.
My kids on the other hand have each battled their own seemingly unrelated staph infections. For my 2 year old, this meant just a small spot above her lip that was easily treated with some Mupirocin. My eight year old however, had to endure twice-daily baths with hibi-clens, and her own tube of Mupirocin. All wounds were covered up with what easily totaled over a hundred band-aids after all was said and done. She also got a full 10 day course of Bactrim. This was nasty stuff. Thankfully, other than some residual dry skin, that’s all cleared up.
I finally got in to see a rheumatologist. She is fantastic. She doesn’t do any new patient intake forms. Instead she asks questions in the room and fills everything out herself on the computer. She was incredibly thorough and had an excellent bedside manner.
After a thorough background history and physical exam, the doctor brought up Ehlers-Danlos. I damn near cried. After all these years, to have someone not only acknowledge my symptoms but to put a name to them was almost more than I could take.
We still need to do testing to confirm it, but she’s almost certain that’s what I have. I got a slew of bloodwork done this past Saturday including Vitamin D and some tests for auto-immune and connective tissue disorders. I’m going on Friday for a bone density scan. The doc was highly alarmed that I was able to give myself stress fractures simply by jogging.
Next up is my most highly anticipated appointment yet on November 18th with a medical geneticist. This doctor should hopefully be able to confirm my diagnosis or suggest another one.
In the meantime, I have developed a new rather alarming symptom – blue hands. I’m slowly turning into a Smurf y’all. After more than 24 hours of varying shades of blue, I went in to see my primary care doc last night. He thinks it’s Raynaud’s Phenomenon, most likely secondary type brought on by the Ehlers-Danlos. It’s most likely nothing to be too worried over. But it’s now just under 48 hours from onset and I’m still pretty Smurf-like. I’m thinking I should call my doc back just to be safe, but I really don’t want to get sent to an ER. The cyanosis (blueness) will stop when I warm up my hands in warm water, but immediately returns at the slightest hint of cold. Grr.
TL/DR: Probable Ehlers-Danlos diagnosis, needs to be confirmed by more testing. Oh and I’m turning into a Smurf. :eek: More updates to come after Nov 18…
Good luck! And good news on the diagnosis! I’ve had migraines, essentially daily, for 3 years. I can completely understand your reaction to finding doc that seemed to actually know what was what!
I’m glad you have a doctor you like and that she has an almost certain diagnosis for you.
Sorry about the smurf hands My mom has that but just mildly, with cold hands and blue fingernails. She struggles with cold hands, I am sure it’s much less fun when they’re so cold they’re blue!
It’s amazing how it can feel to have someone take you seriously and actually figure out what’s going on. That “AHA!” moment where a diagnosis is put forward that just FITS.
I had something similar when I first read about Restless Legs Syndrome - it explained symptoms I’d been dealing with for something like 20 years at that point. I had one doctor look at me like I was nuts when I first described the symptoms, and another (a podiatrist) who misdiagnosed me (interestingly, the treatments he tried did alleviate the symptoms a bit which added to the confusion).
And when I finally saw a specialist in the disorder, I remember nearly bursting into tears because finally HERE was someone who “got” it, who understood the syndrome, who was informed and not tossing out half-informed claptrap.
EDS isn’t curable of course but there’s a lot more knowledge out there now and a lot they can do to help you feel better.
I’ve had migraines, essentially daily, for 3 years. I can completely understand your reaction to finding doc that seemed to actually know what was what!
My mom has that but just mildly, with cold hands and blue fingernails. She struggles with cold hands, I am sure it’s much less fun when they’re so cold they’re blue!